Utah Study Misrepresents Autism Disorders, Report Includes Only Top 10% Highest Functioning Autistic Study Subjects

Wow, talk about your blatant misrepresentation of autism disorders.  A Utah study has followed the lives of 400 persons with autism since the 1980's in an effort to understand their quality of life as adults.  Except that well ... the study only reported on the top 40, or top 10% highest functioning members of the study group:

"Last year’s study – written by researchers at the U., Carmen B. Pingree Center for Children with Autism in Salt Lake City, McGill University in Canada, Los Angeles Medical School and Yale University School of Medicine – offered a rare glimpse into the lives of adults with autism, an understudied population. But it was limited in scope to 41 of the higher functioning participants from the original 1980s study."

Apart from ignoring those autistic subjects who were lower functioning the study only mentions that 20 of the subjects are now dead.  20 seems to me to be a fairly signficant number and a full study of the causes of their deaths as they relate to their autism disorders might be a subject worth elaborating on.  Of course those 20 might have been lower functioning persons with actual, honest to goodness Autistic Disorder and Intellectual Disability not the "good" autistics featured in movies and major media interviews.

Sadly there is nothing unique about the Utah based study.  When it comes to the autism "spectrum" academics often join hands with the mainstream media, and with Hollywood,  to portray the so called spectrum as composed entirely of higher functioning persons with autism.

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Some Autistic Adults Thriving In Utah But Many More Are Not

The autism news out of Utah this week focused on a study that reported that 41 autistic participants out of 241 in a study had higher social outcomes and some had higher IQs. 20 years after they were assessed. Of course that left 200 out of 241 who were not "thriving". And the study, as often happens, excluded the most severely affected by autism, in this case autistic persons with non-verbal IQ's below 70.


More than 80% of the autistic study participants were NOT thriving. And with the most severely affected by autism excluded it is really difficult to see this one as a glass that is half full. Looks more like the glass is almost empty.

Autistic persons thriving in Utah? Not really.

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Flat Out Good Autism News

The word autism has almost become a synonym for controversy.

Parents are routinely mocked and demonized for seeking to cure or treat their own children. ABA, well documented as an effective intervention for autism by decades of study and numerous credible professional reviews is labeled as "unproven" by anti-ABA advocates. Terms such as low functioning/high functioning used in the professional literature are disparaged. Mentioning possible environmental contributors to autism rates is dismissed by some even though studies show that autism can sometimes occur in one but not both identical twins. Even referencing autistic disorders as .... disorders... generates controversy.

But surely there is one point on which we can all agree; that everyone wishes for the safety and well being of all autistic persons. And surely we can all be thankful when news reports tell us that that two autistic persons are now safe and sound after wandering away from their homes in Utah and Boston.

The Deseret News reports that a 22-year-old severely autistic woman, described as having the mental capacity of a 5 year old, who wandered away from home in Provo Utah Sunday night was found safe Tuesday morning in Salt Lake City. In Boston, earlier this week, the Herald reported that a 3-year-old autistic child was rescued from danger by police after drivers saw him riding his tricycle amid speeding traffic on a busy thoroughfare.

As a parent who has experienced the fear and guilt of realizing that my autistic son had wandered away from the safety of home while I was distracted those feelings are revived every time I learn of another autistic person who has wandered away or is missing. The feeling of relief I experienced when, after calling 911, I learned my son was safe at a nearby convenience store where I quickly retrieved him, also resurfaces when the stories have good endings as they did this week in Utah and Boston.

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